Tick-Borne Disease Research Accountability and Transparency Act

Floor Speech

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Mr. Speaker, I rise today on behalf of thousands of Americans who have been impacted by Lyme disease and tick-borne illnesses each year, including in my district in upstate New York, where this is a public health scourge.

This legislation is truly constituent-driven and represents a significant step forward in what has been an extensive process. For the past few years, I have worked with physicians, patient advocates, professional researchers, and patients and their families throughout New York and the United States on a bill that focuses on solutions.

I am proud to be joined by two of my colleagues who have been national leaders on this issue: Chris Smith of New Jersey is our leader, who has, for several decades, been a tireless advocate for our sufferers, and Frank Wolf of Virginia, who has added his significant voice to this issue and has also made incredibly meaningful contributions to this bill and the cause. I thank them both.

Likewise, I thank Dr. Richard Horowitz, Pat Smith, David Roth, Jill and Ira Auerbach, Holly Ahern, Chris Fiske, and other Lyme advocate leaders from Pennsylvania and from across the Nation for their significant and persuasive engagement and unyielding commitment to change the direction of U.S. policy to bring solutions and relief for our chronic Lyme sufferers.

Mr. Speaker, I would also like to thank Chairman Upton, Chairman Pitts, their ranking members, and their dedicated committee staffs. Thank you all for your great work.

In August of 2013, the Centers for Disease Control and Prevention estimated that the number of Americans diagnosed with Lyme disease each year is now over 300,000, while other researchers, such as Holly Ahern, have shown that we are significantly underestimating the cases in the U.S. It is clear that the increase of Lyme disease and other tick-borne diseases is rapidly becoming a public health crisis in the United States. While the CDC, NIH, and other Federal agencies have recognized this threat to public health, regrettably, we have made far too little progress in improving prevention, diagnosis, and treatment.

This legislation before us seeks to make a positive difference, prioritizing and coordinating Federal tick-borne disease research through an interagency working group made up of relevant Federal agencies as well as non-Federal partners, such as experienced physicians, researchers, patient advocates, and chronic Lyme disease patients themselves.

The working group is tasked with ensuring interagency coordination, accountability, and transparency, minimizing overlap, examining research priorities, and ultimately making policy recommendations. The working group is required to reflect a broad spectrum of scientific viewpoints and ensure patients and their advocates have a seat at the table.

The bill increases oversight and accountability over tick-borne research throughout the relevant Federal agencies, ensuring all stakeholders are situationally aware of all existing research before making policy recommendations.

Importantly, this bill also requires the Secretary of Health and Human Services, informed by the working group report, to submit a strategic plan to Congress to improve patient outcomes to cure our chronic Lyme sufferers. This plan will include benchmarks to measure progress, ultimately ensuring we spend the taxpayer dollars wisely and find solutions and cures that are long overdue.

Finally, this bill is dedicated to those chronic Lyme sufferers out there who have been ill for years, at times seemingly without hope, wondering if anyone in Washington was listening or cared. We hear you. We do care. Today we pass this legislation to help you get better.

I urge my colleagues to support the bill.

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